Living with epilepsy doesn’t mean life stops
By Sofi Quintana
Hi everybody! My name is Sofi and I’m a 19 year old youth advocate. I was diagnosed with epilepsy when I was in third grade. At the time, I didn’t fully understand what that meant. I just knew that suddenly there were more doctor’s appointments, medications, and questions about my health. Like most kids, all I wanted was to feel normal and fit in with everyone else. For a long time, I tried not to talk about my epilepsy. I worried people would see me differently or treat me like I was fragile. I didn’t want to be known as “the girl with epilepsy.” I just wanted to be Sofi.
As I got older, I realized that some of the hardest parts of living with epilepsy weren’t always the seizures themselves. Sometimes, it was the way people responded to them. When I was in school, I experienced mistreatment related to my epilepsy that made an already difficult situation even harder. Instead of feeling supported in a place where I was supposed to learn and grow, I often felt misunderstood. There was a lack of awareness about epilepsy and seizure first aid, and that lack of knowledge had real consequences. Eventually, the situation became so difficult that I had to transfer schools. At the time, it felt incredibly unfair. I was the one living with epilepsy, yet I was the one who had to leave and start somewhere new. It was emotional, frustrating, and honestly something that stuck with me for a long time. But looking back now, that moment became a turning point. Instead of letting that experience silence me, it pushed me to start speaking up, not just for myself, but for every student with epilepsy who deserves to feel safe and supported at school. That’s what led me to advocacy.
I had the opportunity to travel to the Florida Capitol in Tallahassee and advocate for legislation that would help protect students with epilepsy. I spoke with lawmakers about a Florida House bill that would mandate seizure first aid training in schools. This training is incredibly important because seizures can happen anywhere, including in classrooms. When teachers and school staff know how to respond, it can make all the difference. Something as simple as knowing the correct seizure first aid steps can prevent panic, reduce harm, and ensure that students with epilepsy are treated with care and understanding. Standing in the Capitol, sharing my story with legislators, was a full-circle moment for me. The same experience that once made me feel powerless had now given me a voice.
Now, I’m in college, and while epilepsy is still a part of my life, it no longer feels like the thing that defines it. I go to classes, stress over exams, and try to figure out what I’m doing with my life just like every other college student. I joined a sorority, which has been one of the most fun and meaningful parts of my college experience. Being surrounded by a community of supportive girls who know my story and support me through it has meant more than I can explain.
Living with epilepsy doesn’t mean life stops. It just means sometimes you learn to move through life a little differently. Of course, there are still challenges. Managing medications, prioritizing sleep, and staying aware of my health are all things I have to think about every day. But those things have also taught me responsibility and resilience in ways I probably wouldn’t have learned otherwise.
Epilepsy will always be a part of my story. But it’s not the only part. It’s the reason I started Project T.E.E.N. (Teens Experiencing Epilepsy Now). And it’s the reason I want to make the world a little more understanding for people living with neurological conditions.
If my younger self, the girl who was once afraid to even say the word “epilepsy” out loud, could see me now, I think she would be proud.
Because today, I’m not just living with epilepsy. I’m just living my life!
